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LawSeq Conference Videos Now Available

May 29, 2019

Videos of all sessions of the LawSeqSM conference are now available. This event brought together an eminent group of scientists, researchers, attorneys and clinicians on the campus of the University of Minnesota to grapple with gaps and areas of confusion in genomic law. The symposium was part of the LawSeqSM project, an NIH-funded effort to shape the future of law and policy to encourage the translation of genomic medicine ​from lab to clinic. View the conference videos here. A related resource is the LawSeqSM genomic law website, which includes a searchable database of relevant state and federal law as well as articles and commentaries to provide context. 

Publication

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International Germline Editing Commission Launched

May 22, 2019

The US National Academies of Science, Engineering and Medicine and the Royal Society of the UK have announced the formation of an expert group to develop a framework to guide scientists, clinicians and regulators in their use of human germline genome editing. According to the release, "The commission is the latest action from the international science community to address issues around human genome editing. It follows [last November's] Second International Summit on Human Genome Editing in Hong Kong," where scientist He Jiankui shocked attendees by revealing the birth of twins whose genomes had been edited. Germline editing is of particular concern because genetic changes will be passed down to future generations, greatly expanding the potential for disastrous, unanticipated outcomes. “'These revelations at the summit in Hong Kong underscore the urgent need for an internationally accepted framework to help . . . address the complex scientific and medical issues surrounding clinical use of germline genome editing,' said NAM President Victor J. Dzau and Royal Society Vice-President John Skehel, co-chairs of the commission’s international oversight board, in a joint statement." The law and policy related to clinical uses of genomic medicine are among the topics addressed in the LawSeqSM project, co-led by Consortium Chair Susan M. Wolf. Learn more about relevant, existing regulations here

News

Kate Brauman

IonE Scholar is Key Author of UN Report on Species Extinction

May 14, 2019

Kate Brauman's day job is at the University of Minnesota's Institute on the Environment (IonE), a Consortium member. There, she is lead scientist for IonE's Global Water Assessment, which incorporates policy and economic approaches into water resource management. Recently, however, she's been tapped as a spokesperson for her contribution to the shocking, recent United Nations report on the accelerating rate of species extinction. An article in the Star Tribune describes the report's findings and Brauman's role in developing a major section on natural water systems and serving as coordinating lead author for the entire report. Brauman has been interviewed by media outlets throughout North America and in Europe, Asian and the Middle East. You can read her full bio here

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Science, Wired Feature LawSeq Conference

May 1, 2019

Two major media outlets have run coverage of last week's LawSeqSM conference and webcast, held on the University of Minnesota campus. Science Magazine focused on the difficulty of accurately interpreting genomic variants, and the legal liability claims that could result. The article quotes Prof. James Evans (University of North Carolina), a member of the LawSeqSM working group: “The genome is static, but our ability to analyze it and interpret it is undergoing dramatic change. We don’t understand most of these variants, nor their potential impact on health and diseases . . . and we change our minds a lot, which is kind of frightening for patients.” In Wired Magazine, the writer homed in on genetic privacy, including observations by Mark Rothstein (University of Louisville), also a member of the working group. He stated, “In the US we have taken to protecting genetic information separately rather than using more general privacy laws, and most of the people who’ve looked at it have concluded that’s a really bad idea." Rothstein contrasted US laws and policy with those of the European Union, where DNA is treated as personal data. The LawSeqSM conference is part of an NIH-funded project to map the law of genomics for translation from laboratory into clinical settings. Learn more about LawSeqSM here

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Research Ethics Conference Videos Now Available

April 1, 2019

The fourth annual University of Minnesota Research Ethics Conference, held on March 6, explored how big changes in rules and oversight are affecting researchers and research participants. Recordings of all sessions – including plenary talks by Carrie D. Wolinetz (National Institutes of Health), Pearl O'Rourke (Partners HealthCare, Harvard Medical School, All of Us Research Program) and Jeremy Wolfe (Harvard Medical School, Brigham and Women’s Hospital) – can be viewed here. Videos of most Consortium events are archived on our YouTube channel at z.umn.edu/ConsortiumYouTube.

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Michael Imperiale

Video Now Available: Imperiale Describes Biosecurity Needs

March 18, 2019

On Feb. 28, Michael Imperiale (University of Michigan) shared the work of a committee he led that was tasked with outlining potential responses to new bioweapons. The lecture, which was part of the Consortium's series on Consumer-Driven and DIY Science, reviewed the recent history of US bioterrorism preparations, and described the opportunities and challenges presented by the emerging field of synthetic biology. Prof. Imperiale was joined by Michael Osterholm of CIDRAP, a Consortium member center, who added a policy perspective based on his expertise in infectious disease and public health. The moderator of the event, Amy Kircher of the Food Protection and Defense Institute (also a Consortium member), added insights from her experience as part of the national security apparatus. Video of the event is available here 

Publication

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Wolf Describes Policy Solutions for Future of Genomic Medicine

December 11, 2018

The November/December issue of Minnesota Medicine features PDF icon an article by Consortium Chair Susan M. Wolf about the legal and regulatory underpinnings needed to advance genomic medicine. It is part of a special issue on the future of medicine, and provides an overview of the NIH-funded LawSeqSM project Wolf co-leads with Ellen Wright Clayton (Vanderbilt University) and Frances Lawrenz (University of Minnesota). LawSeqSM is dedicated to analyzing current US federal and state law and regulation on translational genomics. Results of the effort will be the development of consensus guidance on what the law should be, as well as the creation of a website aggregating the statutes, regulations and case law related to genomic medicine. The Minnesota Medicine article was co-authored by Kathryn Grimes, Communications Director for the Consortium.

News

Prof. Consuelo H. Wilkins

"Law, Genomic Medicine & Health Equity" Event Tackles Policy Needs

December 3, 2018

On Thursday, Nov. 29 a group of eminent scholars and researchers convened at Meharry Medical College in Nashville to evaluate the current state of precision medicine and how access to it can be improved. Conference presenters shared a wide-ranging array of information about obstacles and solutions to delivering genomic medicine in clinical settings, with a particular focus on policies to promote health equity. The event, which involved several dozen in-person attendees and 200 webcast viewers, concluded with a talk by Consuelo H. Wilkins (Meharry-Vanderbilt Alliance). Prof. Wilkins described her work with the federal All of Us Research Program, for which she serves as head of the Engagement Core. She emphasized the need to address the underrepresentation of minority populations in research, as well as mistrust and limited genomic literacy. One of the important takeaways from Prof. Wilkins' talk was the need to reframe the benefits to research participants of collaborating in studies, from returning results to returning value – that is, information these communities find useful. The event was presented by the Meharry-Vanderbilt Alliance, Vanderbilt University Medical Center, the Consortium, and the Minnesota Precision Medicine Collaborative. A special symposium based on the conference will be published in and issue of Ethnicity & Disease guest edited by Marino Bruce (Vanderbilt University), Vence L. Bonham (National Human Genome Research Institute - NHGRI) and Consortium Chair Susan M. Wolf (University of Minnesota). Video of conference sessions will be posted in the next 10 days; to receive notification, please email consortm@umn.edu

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Climate Change Report Sparks Changes to Everyday Habits

October 29, 2018

Earlier this month, the Intergovernmental Panel on Climate Change (IPCC) released an alarming report forecasting the effects of global warming above 1.5°C when compared to pre-industrial levels. The IPCC whitepaper predicted massive forest fires, widespread drought and increasingly violent storms in the coming decades, and called for the complete elimination of the use of fossil fuels by 2050. Given the dire outlook, it's tempting to succumb to despair and inertia. However, local environmentalists are both calling for positive action and taking steps in their personal lives to help address the problem. According to the Star Tribune, among those working on small-scale solutions is Jessica Hellmann, Director of the Institute on the Environment, a Consortium member. Prof. Hellmann's family has installed solar panels on their St. Paul home; she is renowned for her advocacy of not simply working to stem climate change, but also plan for adaptation in the face of a warmer planet. “The narrative is that we’re going to have to … sit in the dark in a cave. The life that alternative technologies can provide is pretty enriching,” she said. Read the entire article here

News

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Wolf, Evans Critique Recent National Academies' Return of Results Report

October 11, 2018

In an article appearing in the Oct. 12 issue of Science, Consortium Chair Susan M. Wolf and Barbara J. Evans of the University of Houston Law Center sound the alarm about a recent report from the National Academies of Sciences, Engineering, and Medicine. The Academies' report on "Returning Individual Research Results to Participants" makes recommendations on how to share research results and data with people who agree to participate in research studies and calls for problematic changes to federal law. In Science, Wolf and Evans argue that the Academies' recommendations are "rooted in confusion about the law." They maintain that "The Academies' report endorses the idea of participant access to results and data, but then builds daunting barriers. The report rejects established legal rights of access, two decades of consensus guidelines, and abundant data showing that participants benefit from access while incurring little risk. The report too often prefers paternalistic silence over partnership. . . . True progress on return of results requires accepting participants' established rights of access and respecting the value that participants place on broad access to their data and results. The next step is not to build barriers but to promote transparency." Read the entire Science article here

News

Lisa Ikemoto

Spotlight on Emerging Legal Approaches to Cyborgs, Biohacking

October 4, 2018

A recent Star Tribune profile of Frances Shen, JD, describes his work in neurolaw, a field he has pioneered. Prof. Shen, an affiliate member of the Consortium, focuses on the intersection of brain science, law and policy. In his research, he uses advances in scanning and other technology to better understand the connections between the brain and human behavior. He notes, “Seeing the world through brain circuitry is a really foundational shift, not just for law, but for policy. . . . A hundred years ago we just had to guess how the mind was working. And we still have to make a lot of guesses. But we know a lot more than we did . . . and it would be nice if the law caught up.” Another take on emerging technologies and the law will be presented by Lisa Ikemoto, JD, LLM (University of California, Davis) on April 3, 2019. Her lecture, "Biohacking and Cyborg RightS: Coping with Promise and Peril," will describe the work of citizen scientists and others who are working outside of academic and institutional labs to enhance human capacity. Prof. Ikemoto will examine the implications of "cyborg rights" for law and for defining the human. Her lecture is part of a series, Consumer-Driven and DIY Science. Learn more and register here

News

Jessica Hellmann

IonE Among Recipients of NAFKI Challenge Grant

September 12, 2018

The National Academies of Sciences, Engineering and Medicine (NASEM) has awarded a NAFKI Challenge grant to a team including Jessica Hellmann (left) of the Insitute on the Environment and Bonnie Keeler of the Humphrey School of Public Affairs. The $500,000, two-year research project, “Institutionalizing Interdisciplinarity," will use sustainability science as the focus of an effort to create and model the infrastructure required to make research across multiple academic areas more common and effective. According to Prof. Hellmann, “Society needs science – and scientists – more than ever, because we need knowledge to confront our greatest societal and environmental challenges. But it takes a special kind of scientist, one who can work side by side with society, to bring about a better future. This project convenes the organizations and leaders who are creating and supporting this new kind of creator and doer. This group can change how science is done, why it is done, and for whom.” The Institute on the Environment (IonE) is a Consortium member, and represents the type of multidisciplinary research at the intersection of science and society the Consortium has pursued and supported since its founding in 2000.

Conference

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Louise Slaughter

Louise Slaughter, Lead Author of GINA, Passes Away

March 20, 2018

New York representative Louise M. Slaughter died last week at the age of 88. She was trained as a microbiologist and was one of the longest-service members of the US House of Representatives. Among her many accomplishments was serving as lead author of the Genetic Information Nondiscrimination Act (GINA) of 2008. This landmark legislation protects individuals from genetic discrimination in health insurance and employment; it was designed to help ease discrimination concerns that might keep people from getting genetic tests that could benefit their health. The law also enables people to take part in research studies without fear that their DNA information might be used against them in health insurance or the workplace. According to Eric Green of the National Human Genome Research Institute (NHGRI), "We have truly lost a genomics champion. Louise Slaughter had the vision that GINA was needed to ensure continued advances in genetics and genomics research, especially for clinical applications — and she was completely right. Our research community will remember her commitment to these important social and ethical issues." GINA is among the laws that will be accessible via the website of the NHGRI-funded LawSeqSM project, for which Consortium chair Susan M. Wolf is Co-PI with Ellen Wright Clayton of Vanderbilt and Frances Lawrenz of the University of Minnesota. LawSeqSM is dedicated to building a legal foundation for translating genomics into clinical application; the website will go live in spring, 2018. 

News

Al Levine at podium, Research Integrity Conference 2018

Consortium-led Conference Charts a Path Toward Greater Research Integrity

March 15, 2018

In a recent KARE 11 interview, Consortium Chair Susan M. Wolf discussed current challenges to research integrity and described how they can be addressed. The news report hints at a larger set of issues that threaten to slow advances in knowledge and undermine the public’s trust in science. Last week, at the Research Integrity and Trustworthy Science conference, national experts in biomedicine, the social sciences, law, ethics, and more converged at the University of Minnesota to grapple with pressing research problems, including researcher misconduct, inadequate education of new researchers, predatory journals that fail to perform thorough peer review and oversight lapses. An article in Inquiry, the blog of the University of Minnesota Office of the Vice President for Research (VP Allen Levine is pictured), describes the conference proceedings and delves into the plenary sessions, which highlighted how research ethics rely on three parties: researchers, academic journals, and research institutions. Video of this year's sessions are available here. Information on previous annual Research Ethics conferences can be found here, here and here.  

News

Baby

Georgieff Co-authors AAP Policy Statement on Infant Nutrition

February 12, 2018

Two University of Minnesota professors have co-authored a major nutrition policy paper on behalf of the American Academy of Pediatrics (AAP). Sarah Jane Schwarzenberg of Masonic Children's Hospital and Michael K. Georgieff of the Center for Neurobehavioral Development, a Consortium member, wrote the report on behalf of the AAP's Committee on Nutrition. The article recommends foods that ensure healthy brain development in the first three years of life. It also notes that, while breast milk is preferable for a baby's first six months, after that breastfeeding moms and their partners should supplement infant diets with a variety of foods rich in iron and zinc, including lean meats, fruits and vegetables. An article in MedPage Today outlines the paper's policy recommendations related to major programs such as Special Supplemental Nutrition Program for Women, Infants and Children (WIC), Supplemental Nutrition Assistance Program (SNAP) and the Child and Adult Care Food Program (CACFP), all of which are important to ensuring the availability of healthy food options. The authors encourage pediatricians to provide guidance on "informed food choices" and help families connect with nutritional programs such as food pantries and soup kitchens. Prof. Georgieff is a member of the Consortium's Executive Committee